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Last year in summer, in the absolutely baking heat (okay so I get hot easily), every time I went on leave from hospital, I lived in a poncho, and I’m not talking a waterproof one, I’m talking a thick woven poncho. Why? Because I thought it hid me. I thought no one could see my weight when I was wearing a massive poncho. I don’t however think I was quite as inconspicuous as I thought walking round Richmond Park in the height of summer in the stereotypical winter attire of an alpaca farmer with my arms out trying to get a breeze through.

While others lived in shorts and T-shirt’s, in bikinis, I lived in my poncho and eventually when I gained a bit more confidence, a men’s size XXXL jumper. I was absolutely terrified of people seeing my body size.

Anorexia for me had started with a way of getting control, but as my brain became more malnourished, so did my ability to see sense, to see my size accurately, to see that no matter my size, I had no one staring at me, no one judging me (in an ideal world), no one thinking the same about my body as I did.

So what about this summer? Well the poncho has retired. Most days the XXL waterproof jacket remains, but a healthy weight has started to bring clarity, a kindness towards myself, a peace with my body. But for me and for so many, summer comes with struggles. So be kind, be patient, be nonjudgemental.

No, I’m not talking about the tv programme, or that word you
shout when someone cuts you off while driving. I’m not even talking about
anorexia, a topic that’s come up on here before. I’m talking about
autism.

It’s not something I often talk about, not to friends or
family, and the vast majority of people in my life don’t know I was diagnosed
last year. In a film I watched about Temple Grandin, she says autistic people
are “different but not less”, and it’s something I remind myself often. I see
the world, the patterns, the rules, the chaos, the pain, the people. Sometimes
I feel like I’m seeing more than neurotypical people, sometimes maybe less, but
I know autism doesn’t make me any less of a person. The difficulties I face
every day, the ones I so seldom mention, the ones I often hide, don’t mean I am
worth any less. But why with all this hiding, with the quiet challenges I face,
why talk about it now?

There’s a quite striking statistic that 1 in 5 women with anorexia have autism as well, and autism is underdiagnosed in women, leading to years of misdiagnosis or denial of the help they (or we) need. I’ve lived with autism my whole life, but anorexia is still fairly new to me. Rather than the stereotypical body image symptoms, for me, at first, food just seemed an easy way to control my life when my routine changed – I couldn’t stop the world changing around me, the days muddling up. I thought I could stop one part of the chaos, but I was wrong. Anorexia is chaos. Hospital was chaos. Life was chaos.

Now? Well I’m still autistic if that’s what you were
wondering, and I still have anorexia, just like so many undiagnosed others, but
we all have a place to raise awareness of how often the two come together. It
took years of treatment before the possibility of autism was mentioned in my
care, and it took me being hospitalised to finally get a diagnosis, but with
greater awareness, diagnosis can be earlier, and more importantly so can the
access to the correct support.

This week is Eating Disorder Awareness Week. I don’t need an awareness week, I am so painfully, ridiculously, exhaustingly aware of my eating disorder every single day.

You see I was x kg, bmi of x, eating x calories a day doing x amount of exercise a day. And what is x? Well it doesn’t matter. Not a single one of those numbers has to be low or high for me to justify my diagnosis. My suffering is not quantified, summed up or lessened by those numbers.

I may not need this week to remind myself of the seriousness of eating disorders, but so many others do need this week of awareness, of myth busting, of open conversations. So many others for so many different reasons. For some, they need educating, eye and mind opening. For some, such as those with eating disorders other than anorexia, for those from the BAME communities, for men and non binary people, for those who don’t fit the stereotypes, they need representing, an opportunity to have their voices heard, their stories shared, their pain acknowledged. It is such an important time to not only talk about eating disorders but to listen to those whose stories so often go unheard (and those whose stories are).

I’ve found this week quite overwhelming in terms of the coverage of eating disorders, the constant barrage, but I realise the need. It’s okay however to switch off from these things if you need to. Your experiences are valid whether they are shared or not, or whether they are represented in mainstream media. Your experiences are valid and important, your strength clear and your struggles real.

Anyway, moving on… Today is Time to Talk day, a day where we
all are encouraged to start conversations about mental health, to share how we’re
feeling and this year, our recipe for the perfect way to start talking.

Time to Talk Day

I’ve always been very good at talking about my mental health
in the past tense: I was ill, I was experiencing x, I was in hospital, I was
struggling with my mental health, but today I am. Every day I am.

Last Time to Talk day, I was in hospital but a couple of
months before that I was working, I was leaving the house, driving, going out
with friends. I was miserable, and suffering, a lot, but I was living. I wouldn’t
say hero like my title says, but zero is definitely the word I would use. I
went from a New Years Party, to a little over a week later sat in a hospital
bed, and a month later, sat in a hospital too scared to leave the grounds.

Today, I feel like I’m barely living at all. I go for dog walks,
and sometimes to the coop on a good day, but the world passes me by. I spent so
long running to keep up with the world, hobbling along while I did it, searching
for something to make things better, to make me whole again, but I was always
one step away from control, one step from beating the misery, and maybe one
step from living. And now? Maybe I’m a whole lot of steps from living. The
world turns one way, while I walk the other, and that’s okay.

The beautiful Lily

But I have glimmers of hope, friends who visit, text, call,
my beautiful cat and beautiful dog, my dad aka dog walking buddy aka safety
net, my mum aka problem solver, my sister aka all round good egg. I have glints
in the darkness of light and kindness and calm, and my suffering is not
conquered by them, nor overly lessened by them, but it is accompanied by them.
I face the darkness all the same, but I face it with an army.

So back to Time to Talk day. My recipe for starting a conversation on mental health?– One blog post– Two people– And a whole lot of space without judgement

My old roommate Emily used to fan herself with her exam books to “osmosis the information into her head”.

When I was told to come up with some positive statements and affirmations for myself, I wasn’t sure quite where to write them. I needed somewhere where they could be instantly available, constantly comforting, a friendly reminder that things were somehow, at some point, going to be okay. So where better than a scrunchie to “osmosis” into my head?

I thought I’d share with you 7 of my favourite scrunchie affirmations:No matter what you ate yesterday, you still have to eat today.I am a lightly dusted croissantBelieve in youI am safe. That is enough. I am a majestic camel.I do not need to earn the right to eat. I am doing the right thing.

Some of those are self explanatory, some of those are near unexplainable, but whatever helps you through the day is perfectly okay and perfectly valid.